Saturday, May 29, 2010
I'm going to give my site a couple more days and hopefully the irritating pics disappear.
If not, I guess after almost TWO FULL YEARS of writing (July 28, 2008 to be exact), I could change up the format and make those images disappear.
Very import, Now let's be honest people, is the music good or bad?
Should it stay or should it go?
Sorry for the reading inconvenience.
Thank you everybody who notified me of the problem
Friday, May 28, 2010
It still surprises me when I hear the bath start early in the am knowing its just x and I in the house.
I am happy I've made it to this point, the point where my family has routines and stability. We have a solid lifestyle that can be depended on even in an emergency. We've finally made it.
Let me hear you say, "aahhhhh.".
No time for big posts today except to say I'm doing great.
I spent a fabulous day with killy and co. prepping for her wedding with a spa day yestrday.
We were feeling some kind of chic going to The Spa at Castle Hill Resort in Ludlow, trapsing around by the pool in our robes and slippers while waiting for our hot stone massages.
The spa offering a Sun- Thurs. special of a facial and 50 minute hot stone massage for $99. This includes full use of the facility: a gym, pool, hot tub, and dry sauna.
If you do find yourself heading to Castle Hill, ask for Beth, who spoiled me with a fabulous massage combined with some foot reflexology.
Patients at Norris cotton and Dana Farber can access this kind of pampering right in the hospital. If you're at Dana Farber, head to the Zakim Center. If you are at Norris cotton, I would ask your nurse. Therapists come right to your bedside there.
Cancer center's don't offer french manis & pedis though, and that's where we headed after our relax lounge time was over so the bride could begin her official wedding beauty regimen.
I do love the tradition of pampering yourself before any big event. It's the only time I ever get my nails or toes "done" and it's always worth it.
I don't think I would feel so posh if I indulged myself weekly though,
or even monthly, what ever.
Today, again, is not about me
which excites me. I love being invited to participate in other people's life events, especially this time with Vince and Killy getting married.
Killy and I have been friends since freshman year of high school. We've seen each other through years of life changes. It is amazing to see her officially confirming she has found her partner. It's even better because I think everyone agrees, they're pretty perfect together.
Thursday, May 27, 2010
I got ahold of my heme team in Boston after I needed to be transfused last week.
I didn't like that my h and h had been trending down slowly but steadily with no known cause.
I needed reassurance it wasn't that nasty little tumor on my kidney causing problems even though Dr G said he felt it wasn't.
I'm all for gut instincts, but after this fall's events, I said I would never hesitate to consult or see my bean town team. Had I run to consult them early on, I could have saved myself a lot of suffering.
Good news is it's common for patients to need transfusion support when undergoing photopheresis.
My treatment is probably the cause of my anemia and not some pathological process.
Now, if only they could explain away my steadily increasing kidney function tests.
I have been keeping my eye on those two. My creatinine reached 1.4 this week, which isn't failure, but I certainly don't ever want to have that problem.
Having my kidneys fail is another fear of mine.
When I was in a coma, my friend Doc would come to visit and immediately check for urine in my catheter bag. He was checking for kidney function bc he knew once my kidneys failed, I was as good as gone.
That's always stayed with me.
I want to keep my kidneys in tip top shape.
I'm going to start receiving fluids along with pheresis. Pheresis all ready infuses half a liter with treatment. I'll be getting a whole liter from now on.
I'll continue to drink as much as possible.
I guess I could drink more, but I do imbibe about a gallon a day. I'm adding crystal light to make water more tolerable. It's working.
Anyway, drinking more is a twofer since I'm decreasing my prednisone again in a week to 10mg, A person's body naturally creates about 7.5 mg of steroids, Just a little tidbit you can now answer if anyone ever asks, so I'll possibly, hopefully, may start losing some weight.
Kevin, the empathetic nurse from pheresis, came to me and asked, very quietly, how much I weighed.
I looked around the room, wondering who he was trying not to irritate by whispering. "WHAT?!" I squacked, I can be slightly deaf.
"I weigh 150 lbs." I announced clearly.
"What?!" He whispered back. "You do not! You are 135!" He exclaimed in hushed tones.
"What the hell was going on with this whispering?" I thought to myself. There was no one else around.
"No, I just got weighed yesterday. I'm 150." I said stubbornly, adamantly, loudly when I suddenly realized he was whispering the question to be courteous to me!!
How cute. Ladies are often embarrassed by their weight.
Again,I never thought to be embarrassed until he was for me. I just think there is more woman for you to love now.
For real now, I really am thinking about this weight gain like pregnancy. It's a bodily change I have no control over. It's for the greater good. It's also temporary. When the meds are lifted I'll see exactly what was a side effect and what was good old fashioned eating.
I do still hate to see myself in pictures. I hate that my face feels different and I don't have command over my expressions like I used to due to the swelling. I think this has dulled my emotions. I feel with every part of me, and now, I just dislike how I look when I smile.
My head is huge. I feel like "Fat Head" from Dick Tracy. To help with this, I've started to try to look at and think of myself the way x looks at me, or my parents, or any of the other people who love me, which is actually more people than I ever imagined.
All they see is my behavior, whether I am happy and healthy and joking that day. That's all that seems to matter is that I'm well enough to be me, the fun, silly me on the inside. So I've made the conclusion, it's official, it really is what's inside that counts.
Wednesday, May 26, 2010
Happy Birthday, Killy!
Yes, I stayed up until 2:30 am and woke at 7am.
It felt just like college, like old times, when I would commute between nh and nyc.
After our son was born, j opted to stay in nh to work while I remained in college in ny tues-thurs, but sometimes I'd stretch out the week to friday for some thirsty thursday night fun in. And believe it or not, I didn't drink in college, but not for the same reasons I didn't drink last weekend.
We ended up at a Club called "The Liquor Store," which had made for party-planning mix-ups all week ("Ok, then after the Improv, we'll head to The Liquor Store. . . " "Hill, Don't they have a bar there?" etc. etc.)
The main attraction of The Liquor Store is that it caters specifically to bachelorettes, letting the whole party in for free before 11pm and giving out free swag bags.
Don't be fooled by their good marketing, the swag bags got ditched for being cheap. They didn't include the "bachelorette" tank top promised. It did come with a cheesy plastic light up cup and penis straw.
The penis straw promptly ended up in the mouth of the lesbian in our group.
We thought it was more important that she get the experience.
The main attraction, and selling point, was the mechanical bull front and center. I had big plans to incite the group into riding.
One lone member of our group made it on. The line cut-off and the bull shut down right before we made it at only 12:30 am!!
This was clearly a case of "brunetticism" if I've ever seen one, yes, discrimination against brunettes.
The line was cut right before the brunette, mid-length haired friend with glasses.
The bull did get fired up again later in the night for one rowdy, raunchy show though.
I swore it was n employee riding the thing. She did have long, blond hair, a plaid shirt on and white/ see through daisy dukes.
If she didn't work there she certainly came prepared, but I guess that's what you get.
Just for kicks, for giggles, I'll load the video of an anonymous member of our party having a go at the bull.
You can finally live vicariously some of the better parts of m life.
Tuesday, May 25, 2010
- send me a quick email to let me know a call has been made-we're tracking this very closely
- send this out to everyone in your email address book-post it on FaceBook! We need our voice to be LOUD AND CLEAR!
American Cancer Society
One Bowdoin Mills Island Suite 300
Topsham, Me 04086
Monday, May 24, 2010
. . . keep you from dancing.
Saturday, May 22, 2010
Thank you everybody who has ever gone out and donated blood in their lifetime.
Getting a blood transfusion is the only possible way to infuse energy into me.
I’m feeling perky.
I’m feeling ambitious.
I’m finally getting around to playing with my new camcorder.
Maybe some of you have noticed the lack of videos on my site.
This wasn’t due to laziness.
Oh no, this was due to chemo brain and months of self punishment for being stupid enough to lose a $300+ camera.
I’m pretty sure that camera with its 68mg SD card is now the property of some lucky staffer at The Boston Museum of Science.
Like they need another one of those.
I’m sure tourists like me are forgetting them in their lockers all the time.
It took a while to stop penalizing myself for being an idiot, then I had to scrounge the cash together, then I had to look around for the perfect camera at the perfect price.
When all that was finally said and done it’d been 3-4 months.
Now I have an even better camera that takes both quality pictures and video with 60X zoom (great for sporting events) that I didn’t quite know how to use.
Technology really improves in a couple years. I have a sony handcam with touch screens and all sorts of settings that I never dreamed with the other cam I just bought a couple years ago.
Today I’m finally working it.
It’s no good if I don’t work it, right?
And honestly, I missed video updates.
Those were one of my favorite parts of the blog. They set me apart from the rest.
And now I have some videos uploaded again.
I’ve accomplished a lot all ready this am.
I was a little worried I’d forgotten how to work all this technology.
With my mind, if I don’t use it I will lose it.
The video taken of me in the hospital bed is the last footage I uploaded from my previous camera.
It interested me since it shows how hopeful I was after my lung biopsy.
I really thought there would be a quick cure to my shortness of breath.
I thought it was a transient acute pathological process.
Thank goodness I didn’t know then what I know now.
I never would have imagined the outcome.
I really hoped for a “funky fungus” that would go away with, at worst, 6 weeks of anti-fungals.
What I got instead was a ailment more life threatening and lethal than the Hodgkin’s itself, six months of photopheresis, and long term steroids.
I’ll post a “re-introducation” to
myself soon, but probably not today.
Probably not this weekend.
I have plans. Big time plans to celebrate Dani!
Friday, May 21, 2010
I left for my appointment extravaganza at Dartmouth yesterday with my purse and a nearly empty art bag.
Thursday, May 20, 2010
Ugh, thank goodness this day is finally over.
Nothing about today made it especially bad. There wasn't one big event. It's just the culmination of a lot of events all at once.
And I'm tired. Even after a 3 hour nap I'm still tired.
So today sucked for no special reason, but I think I've indetified the tipping point, the trigger that put me in the foul mood.
It wasn't x fighting to get out of school, whining and throwing every excuse in the book, it wasn't grocery shopping, which I hate because it's dirty and absolutely exhausting. It's a reminder of how disabled I am.
I dred the grocery store, but not as much as the pharmacy. I went there today too.
No the tipping point was x's IEP meeting. Since x has a diagnosed speech and language delay I go in for yearly meetings to revise his goals based on his needs and accomplishments.
It used to be an easy meeting.
X would get speech therapy.
I would make sure he was healthy and would keep hearing. After three sets of tubes and the removal of his adenoids and tonsils, he still got an ear infx a couple weeks ago. The muscle in his ear is supposed to mature so he's not so susceptible to infx by 8 yrs old. Today he was complaining his ear hurt. I guess he will be 8 when his hearing issues go away. His speech is improving.
He can make correct sounds, except "Rs," and barbara walters has had a long successful career without using those.
But now there are many additions to what was once a single goal.
Yes, now he's identified as "at risk" in reading. He has delays which may require occupational therapy. He has issues with spacial reasoning. His constant movement, which everybody on the team has recognized, was brought up, giving a bit of a shock to me. I knew he was fidgety. I know he"s always moving. He is down right exhausting, but I thought it was in the realm of normal. ADD/ADHD crossed my mind and hasn't left. That's just another issue/diagnosis/problem to deal with alongside his also yet to be diagnosed dyslexia. He also has social impairments from his anxiety and depression.
I'm tired, so tired. Todays meeting only reminded me of everything I have to cope with above and beyond my health issues.
I'm cranky and now looking at x differently, like he's suddenly broken.
Nothing has changed except suddenly I realize that he is probably dyslexic with add/adhd, like me, and there is very little I can do about it. Right now I don't have the energy to form a plan of attack.
Good thing I have a whole team of people in the school who did that for me. The school has been wonderful.
His reading has improved significantly since Jan. When he ranked in the 14th percentile. He is now in the 51 after a couple months of daily 30 min, one on one sessions.
If only he keeps making leaps and bounds like this, I think we'll be okay, just not today. I'm going to bed. Tomorrow, I'll start fresh.
Monday, May 17, 2010
I decided I was going to watch my weight this weekend.
I watched it go up two lbs. One lb. For each day.
How the hell does this happen?
I think I'll give up and wait for an infection to send me back to my normal, scrawny state.
At least I know my new boobs aren't shrinking since I'm sure I'll lose weight in the chest before anywhere else. It's the way life works.
On fri. my fab male nurse kevin was dutifully starting to change my dressing when he suddenly stopped and said, "oh, sorry, I don't even know if carol is here, are you ok with me changing your dressing?"
My first response was horror. Was he inexperienced? Incapable? Was he going tro kill me by giving me an infection? Worse, did he have some sort of disciplinary action against him? Was he the black widower of dressing changers?
".....Because the location may make you uncomfortable." He ended.
Ooooohhhhh, I burst out laughing.
Because I have cleavage!!! Where my port was once innocently placed on bone, I now have breats where I've never had them before!
Thank goodness. I breathed a sigh of relief. THAT problem never crossed my mind.
I like that. It is my excuse as to why the dresses I once wore are now shirts that barely cover my bum. That certainly couldn't be caused by my stomach.
Now that I've accepted my voluptuousness, I think it's time to play up my ass......ets.
I'm going out to buy some reasonable fitting bras that will help the ladies realize their full potential.
In further news, J and I escaped on a coveted date night sat.
I don't remember the last time we had one of these but we're guessing it was in the fall sometime.
Yes, there are times that we "get away" to such exotic locations like Mass Eye and Ear or Dana Farber, but this was the first our time in ...... Yeah, that long, Together, just enjoying.
I made it a group date with some friends.
When 3pm rolled around j and I were scrambling to pack up our chairs from the side lines of x's baseball game and book it to freedom: an entire night with adults.
X was two when I knew I had cancer. I was still carrying him in my arms from the car. He was wearing pull-ups, trying to get potty trained. My friends were also in a very different place: their early twenties.
Most were single but looking which made late nights dancing and drinking their favorite fete. It was terrible adjusting from life in nyc to nh, then again to life as a free single woman to a career family oriented wife, but the worst was the transition from healthy to ill.
Many friends were not understanding or accomodating to the fact that I wanted to be in bed by 9pm, I certainly wasn't going to leave for the bar at that hour.
I remember trying to get these same friends to "do lunch" and being blown off.
Yes, with disease comes a lot of losses and among those are fair weather friends, but what I received in return is the understanding and comfortable acceptance that not every person or every friend can be everything you want them to be. You have to accept them for who they are and what they have to offer as a unique individual.
It's rare to find those fabulous few who meet all our criteria, and even if a tragedy beyond control happens, that doesn't mean your best friends will/can grow up with you.
Remembering these things really puts into perspective how long I've been fighting and How long we've been suffering as a family.
Not a problem any more.
Dinner and a movie took place as a late matinee starting at 3:40. (Robin Hood. I was disappointed. It's more gladiator meets quesi-do-gooder than rob the rich to feed the poor. Would have been made better with more shirtless crowe scenes).
New Socials, the new restuarant that now stands in place of Sophie and Zekes, made up for the disappointing movie. The lobster rolls are a new fresh take on a new england favorite and the steak tips were cooked to perfection (Hey, if I'm getting out, I'm going out right). Everybody in our party was impressed with their food.
All of you in the area, I'm giving you the green light to go.
But for desert, check out Le Moo's (on River rd.; rte 12A), which is now open for the season. This is a barn cum ice cream shop with with beautiful murals and spacious sitting areas to lounge in. Another barn is set up with picnic tables and indoor games. The best thing about le moos (owned by the LeMieux's) other than being around the corner from my house and reasonably priced is.... It was created and run by high school students.
Yes, these young entrepreneurs pitched the idea to their parents and their parents let their imaginations run wild.
How is that for a weekend update: Good things are happening in claremont and in my life. Let's hope the trend keeps up.
Saturday, May 15, 2010
Thursday, May 13, 2010
Yesterday was a hallmark day in the Ford household.
Jon had his colonoscopy.
For those of you who haven't followed my entire story, my
husband Jon has Crohn's Disease.
Crohn's is a form of inflammatory bowel disease that causes abdominal cramping, ulcers, and
He underwent a bowel resection in
July 2008 due to diffuse scarring in hopes it would not only alleviate his pain but cure his disease.
It didn't cure his disease.
Last years colonoscopy showed that the Crohn's was returning.
The disease is measured on Greeat's Scale of 0-4. Zero being no disease, four being scarring beyond repair.
J is now a 2-3.
We're discussing treatment options.
Of course, one of the first line treatments is remicade.
Remicade is a chemotherapy agent that is infused over a three to four hour period once weekly to begin with at $8000 a dose!
It is a time and money sucking drug.
There is another option, newer to the market, another chemotherapy, that we'll discuss at J's appointment in the beginning of June.
Chemotherapy for the whole family!
Not surprisingly, It's getting harder for me to listen to other people's problems.
Let me clarify, the ones that I deem are brought upon themselves or the people have some semblance of control over or the ones that they could control but just aren't.
Those drive me crazy.
There are too many people with too many problems that they never would have asked for, that they never would have brought upon themselves.
Generally, I like hearing about people's trials.
It makes me feel trusted.
I like to help problem solve or lend a sympathetic ear, whatever anybody wants.
It makes me feel needed. I feel wise like a guru who has been through enough to impart my wisdom on others.
Recently, this has changed.
I hope its temporary. I've been moodier, more irritable, less patient.
Before, and hopefully again, I could understand that suffering is relative to experience.
Problem solving is unique to each individuals ability to cope.
What barely registers on my radar can send another person over the edge and to the looney bin.
I Hadn't been bitter about that before. I do now.
This is new since my pet scan. It's new since I officially feel I will never be cured by conventional means.
I am confident and happy with the idea of postponing treatment and enjoying life.
I'm really, FINALLY, enjoying myself again without the stress of thinking I'll have to return to fight for my life.
I'm still hoping for a miracle.
But I'm being tested. I'm being pushed. And somebodies gonna get it...... I'm guessing the next person who complains to me about something trivial.